April 13th is a day to bring awareness to the situations families face when their children have a condition that remains undiagnosed.
Many people living in the rare disease community continue to wait for the day that we can find a name for our children’s disorder. Why is this so important? With a name, with a diagnosis would hopefully come a prognosis, a disease characterization, and maybe even, if we dare to dream, eventual treatment. But for now, let’s keep the dreams small and think of the more immediate things that a diagnosis can bring – access to programs, services, clinics and improved care.
In recognition of the unique challenges facing the community of the undiagnosed SWAN (Syndromes Without a Name) UK and SWAN USA have declared April 13th Undiagnosed Children’s Day. This day was inspired last year when a parent blogger posted about her own undiagnosed child and the challenges they faced. For 2013 the banner has been taken up by the larger community. The Rare Disease Foundation joins SWAN UK and SWAN USA in recognizing the importance of Undiagnosed Children’s Day.
What can we do on Undiagnosed Childrens Day? As in Rare Disease Day, raise awareness – online and in your local community. Let people know that the undiagnosed community is out there and needs their support. Reach out to support your friends in the community.
Help us to support the community. Our Microgrant Research Program dedicates funds for care based research on rare and undiagnosed conditions. As well, our Parent 2 Parent Resource Network offers families of undiagnosed children an opportunity to support one another. No donation or effort is too small. A bake sale, a lemonade stand, can all contribute to improving the lives of the rare disease community. The awareness we build is as important as the funds we raise. Together, we can pull together to change the world of rare disease care!
Remember, Saturday April 13 is Undiagnosed Children’s Day. Let’s let the world know.